You know what they say: A silent blog is a sign of a busy life! Well, that's sorta true in this case. What happened is that I was pounced upon by a very nasty flare, one that lasted somewhere around a week, give or take a couple of days. In the midst of that I've had doctor's appointments, medical tax stuff to hunt down and appropriate and relocate to our tax lady, a trip to Tucson for to see a cardiologist, a Celebirthsary/going away party dinner, and my second wedding anniversary. Even with all of that, I'm still pulling out of the flare, so thank goodness for that! In all honesty, I was worried that it wasn't just a flare, but rather my new mode of existence. That would have been horrible, because I was in such terrible pain that the painkillers would do nothing but blunt the edge of it a little bit, enough to keep me from going crazy and screaming while I hobble down the streets of downtown naked and slicked up with mayonnaise, which I'm allergic to.

Clearly, that didn't happen, or else the government is really good about redacting highly amusing incidents. I would say that I would remember if that happened, but that's not actually the case. Something else I've been up to in this interim (and before, if I'm being honest) is that I've been having some major troubles with sleep and sleepwalking. First the waves of overwhelming fatigue so I'm sleeping 18+ hours a day and exhausted down to the pores of my bones (y'all know what I'm talking about!), and then BAM! Insomnia. Sort of. For a day or two. But now I'm being hit with really bad sleepwalking, something akin to narcolepsy that pulls me into these dream trances when I'm tired, but when I am deep enough into the standing-sleep I go limp and collapse, usually forward, which jolts me out of sleep and usually I can catch myself on whatever counter or corner is nearby. Not always-- I hit my face on the metal shelving of the pantry last week, and my head on the bathroom mirror.

I also do scary stuff, like get into my pain medication thinking it's Benadryl or something else. I recently woke up with six 100 mg morphines in my hand, thinking in the dream that it was Benadryl I needed to take, but thankfully I was lucid enough upon snapping awake that I realized what was going on and put them back. I get food out and leave it.  I open windows and surf Facebook and all kinds of shit, and it TERRIFIES me. What if I buy stuff without waking up or remembering? I don't have any spending money! That could be bad.and screaming while I hobble down the streets of downtown naked and slicked up with mayonnaise, which I'm allergic to.

In a "dream sequence" that I vaguely remembered upon waking, I had--for some very legitimate reason, I swear--gone into the kitchen, pulled out my husband's new package of bratwurst, opened up the plastic covering, then left the whole thing sitting on the cutting board. If Corey hadn't checked the kitchen before going to bed they would have been out all night and spoiled! (He woke me when he came to bed with a forceful yet bewildered, "What's wrong with you, woman?!?") Two days ago I found a strawberry in the pot and pan cupboard. Fortunately, it had only been there for a day or less. I'm not sure when it got there, or why, but it was there all right… and it was delicious! :)

 So there you have it.What might I possibly do to myself during these… "episodes"? I'm scared to sleep, but the more I stay up and try not to, the worse it gets. I called my neurologists office, and when I explained the situation to his assistant A, she was freaked out and said that she'd talk to the doctor immediately, when he was done with what had him busy at that time. So she sent him a note, and now I've got a referral to some place here in town to do a sleep study. They want to see if I have narcolepsy, because these symptoms are awfully similar. In a perverse way, I was glad to hear the concern in A's voice and to see how seriously she took my phone call.  Corey has been annoyed by it, sometimes even amused, but he doesn't seem to think it's that much of a big deal. I had been minimizing it as not so bad, but I knew, I knew, that it is not something to ignore. It's a scary thing, and I could get seriously hurt one of these days. A recognized this a well, and obviously my doctor did too, because the call from A informing me about the referral came only 2 or 3 days after my initial phone call. For those of you who might be professional patients, you know that this time frame is practically unheard of when dealing with the medical system! The cogs move ever so slowly, but this was rapid fire. I'm grateful. The symptoms of this sleep-problem, however, wax and wane, so I'm really anxious about the test, hoping that I'll be malfunctioning during the test so they can see exactly what's going wrong instead of sending me home with a clean bill of health, as so often happens. (On paper, I'm really quite healthy! Oh EDS, you so stealthy!)

The extra-exhausting fatigue appears to be returning, as I slept the entire afternoon and evening away, after being awake for only 2, maybe 3 hours this afternoon. I've been up since 12:30 a.m., and Corey and I took a walk together, which was so nice! Work tires him out so much that he is in no mood to walk anymore, mostly because he's been on his feet and moving around all day. I don't blame him a bit. His feet hurt when he gets home, and I totally understand that. But we walked tonight, and it was very nice. So anyway, back to the fatigue. Yes, it's here, at least for today, but I doubt that it'll confine itself to only one day. I've been tired down to my bones for a long time, and now I just feel… heavy. Maybe the cycle of fatigue and sleepwalking is starting over again, and I just gotta hope that the timing is right for that sleep study to see what they need to see.

Other than this weird medical stuff going on, I'm doing okay mentally and emotionally. I am honestly excited for the challenge of growing up and into myself while so many diseases attempt to thwart my efforts. I mean, when I was relatively "healthy" (been sickly all of my life, and now that I know about the EDS a lot of my childhood makes so much sense to me now), it was pretty easy to express myself in my outward appearance and my activities. Now both of those have been compromised, and I must find new avenues with which to not only express my true self, but to have fun in life and to help other people who are hurting very badly. I tend to think of hurting people metaphorically, but maybe I'm supposed to help the literally hurting as well. I've gotten much encouragement on that subject. We shall see. Life will unfold at its own pace, and not before. I know it sounds all trite and cliched, but it really is all about taking life one day at a time. How can I know that I'll be alive in 3 months? There is no way. And if I try to think about the future and what I can or feel that I need to accomplish, or if I think a certain way about the past, it is then that I feel hideous and lazy and basically an awful specimen of humanity. I can't let myself think like that or send those messages to my psyche. It's twisted and tormented enough from all of the abuse I endured until I was old enough to move on by myself, and I don't need to make myself hurt even more. I would never say the terrible things that I think to a loved one, or even to a random stranger on the street (though I have a few nemeses that I totally would heap the verbal abuse on! *grin* The point is, if I can't say those things to other people, where do I get off abusing and harassing myself like that?

I practiced that "in the moment" stuff today. Day two of strictly couch time (though I did do dishes last night), and the temptation to lay into myself was strong. There was so much I could be doing, I have this many things on my checklist, god I'm lazy, I'm being a wuss so I need to suck it up and go achieve something, I'm not really that sick, etc. etc. So basically I made the decision to say "fuck that noise", and I continued watching my movies and taking my nap that turned into an 8 hour sleep. The urge to hate myself for not just pushing through feeling crappy is so strong, especially because it's not some cold or flu that I can nurse for a while and then return to the world perfectly refreshed, restored, and ready to rumble. Nope-- this'll be here for the rest of my life. So why coddle myself? And yet… there are times when I do push through and get stuff done, but it's because I WANT to, not because I've guilted or hated myself into it. Hating myself into doing something will generally lead to resentment, and that's just the first step onto the merry-go-round of Hell. 

What I've discovered is that, basically… I'm a grown adult and can do what I want! Whether that's spending the day on the couch with movies and tea and my cats or doing laundry and sweeping the house before answering mail, it all comes back to doing it of my free will and not letting myself lose my boundaries or letting them be breached--breached by my own self. How weird is that?! I'll tell ya, it's hard to find the balance that you need to be happy and productive while still being "lazy" because you need to be. And trying to find that balance is exactly the sort of thing that has led to a silent blog. Well, that and fingers too stiff and painful to type. That's a sticking point for sure.

Oh, quick side note: I have a mental health evaluation for disability on the 10th of this month, so I'm kinda nervous but mostly happy. This means that they didn't just reject me out of hand! Yippee! But I've also heard horror stories about how these things go, with obviously and legitimately disabled people being turned away without receiving the help they need. Most everyone has told me to lie, embellish how sick I am, because otherwise I won't get disability. I shudder to think that the system is so far gone that this is standard advice from experienced people. When I say that I won't and don't lie, they backpedal to "Well, just exaggerate then". That… isn't as repulsive, but I still don't feel comfortable doing it. I say that if I am exactly myself and they turn me away, then I will just appeal again and again and again until they are sick of me and give me the money to get me to go away ;) (Shawshank Redemption. Who says movies don't teach you anything?) I have strong speaking skills, and I know that I can be very descriptive and good with words when trying to communicate a point, so I'm counting on that to tip the balance in my favor. I'm told that I'm quite charismatic. Here's hoping it works! The inspector is a woman, and I have this mental image of an older blonde woman in a navy skirt suit, thin, wrinkled face, no trace of humor anywhere, lips pursed, very observant (hawk gaze) and totally crisp and pointed in conversation. I imagine her to be very intimidating. I wonder if my imagination will prove true? I'll have to let you know, of course :)

Sometimes it all just comes crashing down on you and you just need to cry. At least, that's how it is for me. Funny thing is, C has this freaky sixth sense and somehow always just knows when I'm crying, no matter how quiet I think I'm being. And he always comes to find me. Once or twice I've been crying while he's asleep and he woke up to wrap his arms around me and cuddle me. He didn't remember it the next day, though, which I find amusing.

So I was crying in the shower/bathtub in the wee hours of the morning because I couldn't sleep due to so. much. pain., and because I was just so frustrated with my health and how out of control I am of so many things (all traceable to the fact that my health has gone down the crapper and there's nothing I can do about that beyond what I'm already doing) and I hate that I'm gaining weight and can't do diddly squat about it and I'm terrified that C will no longer find me attractive and will be unhappy in our marriage and we'll both just be sad and upset and live these lame lives because I'm sick and fat and sad. I know, I know… silly, right? But when you're hurting very badly and it all just seems so frustrating and unfair, logic seems to step outside for some fresh air and a cigarette break.

I got to thinking, though, as I was sniveling away in the tub, that my appearance is so not all there is to me. I thought about my friends and all the good they see in me, and how they're not friends with me because of my rocking cleavage (although that does help, so I'm told) or my fabulous cheekbones. I started to wonder, what would I think about myself if I were someone else meeting me for the first time or getting to know me?

Here's something a new friend of mine sent to me via a private message on Fb. (I hope she doesn't mind my sharing!)
"I just want to tell you that you're absolutely stunning! Your positive energy and the care I can see you have in you for others. I admire it don't pay attention to the numbers on a scale or douchey doctors! It pains me knowing they don't know what's wrong with someone so kind who doesn't deserve all the mayhem your body is putting you through! Keep a smile on you face because someone is always paying attention to it < 3"

If I were getting to know me, I think this is what I would think. I would think that this person is…

• Funny. She laughs a lot and likes to laugh with others, not at them. If something can be made into a joke, she'll go for it, and she often finds little humors in every day things.
• Smart. She is well spoken, well written, has a large vocabulary, and "has a mind like a trap" according to D. She likes to collect obscure tidbits of knowledge and is fascinated by etymology.
• Kind.
• Giving. She loves to give to others in whatever capacity she can, however little it is.
• Compassionate.
• Stubborn.
• Creative.
• Strong and determined. It takes a special kind of person to withstand those levels of pain and still be able to laugh, smile, and care about other people.
• Ambitious. She has big plans for her life and making the world a better place.
• Talkative. Especially during movies.
• Neat and tidy.
• Sensual. Takes pleasure in the signals received by her senses and in things that bring physical pleasure.
• Has a large, bright smile.
• Thoughtful.
• Skilled at many things. Writing, cooking, creating, interpersonal relationships, attracting and entertaining small children, etc.
• Wise. An old soul.
• Open to growth and learning/Teachable. All this, despite being stubborn.
• Emotional. This is not a weakness, and not a shame.
• Highly relational.
• A nature lover.
• Persistent.
• A lover of the aesthetically pleasing. This goes hand in hand with "sensual".
• Exuberant. Often described as "vivacious", "vibrant", and "bubbly".
• Honest. Hopefully tactful as well.
• Committed.
• Good work ethic.
• Sensitive.
• Loving.
• Encouraging.
• A bit clumsy. Minor injuries are inevitable.
• Responsible.
• Too hard on herself.
• Insecure.
• Authentic.
• Eloquent.
• Adventurous.
• Loyal.

Frankly, this sounds like the kind of person that I'd want to be around, and that I'd want in my life in a big way. Like, she sounds amazing…and none of those qualities and quirks and personality traits that make her amazing have anything to do with appearance. None of them. If I knew a person like this (and I do, actually!), they could be "ugly" according to society's current standard of beauty…but they would still be a desirable person. They would radiate an irresistible quality that would make them attractive on such a deep level that the superficial physical traits would resolve themselves into a beauty of their own. Think about it. If someone is just so wonderful and lovely from the inside out, you find things about them that are attractive, do you not? One day while you are sharing a hilarious joke, you notice the curve of their lips and the slight dimple to one side. As they look deep into your eyes while sharing your pain, you notice the rich and intense color that is only enhanced by the sheen of their sympathetic tears. During a hug, you notice the strength of the muscles rippling in their back, the graceful taper of their fingers and the suppleness of wrist as they hold your hand.

People can be beautiful aesthetically, but a flat, displeasing, or grating personhood will strip them of all attractiveness. All that is left is a lovely shell. Useless. That is not me. My aesthetic beauty has changed, to be sure. I know that I am still attractive, but I do not align so closely anymore with the standard of beauty that is vaunted in our culture at this point. I need to come to terms with that, and to realize that it really is not the most important thing. As I look at the list above…what I would see upon meeting myself, getting to know myself…I find myself very attractive indeed. Or rather, I would if I saw those same things in someone else. It is still so hard to be friends with myself! Step by step, though… I'll get there. Why? Because I'm persistent, and loving, and committed, and kind, and...

It's an interesting thing, chronic illness and pain. It forces you to take care of yourself in ways that most people don't even have to consider. Yesterday, for instance, I noticed the beginnings of an IBS flare (and a brutal one, by all indications), confirmed by today's symptoms and pain levels and placement. So now I have to be really careful in food choice and hydration. I've got a soothing tea steeping right now, and I'll probably try to pick up some safe bread later on today. I've still got a few bucks left from my last paycheck.

It's funny, how far I've come in the whole "taking care of myself" thing. I'm glad I learned so much about being kind to myself and loving myself and that I dropped some of the self-hatred when I did. The pre-kindness me would have been thrilled at so many ways to inflict self-harm and pain.

It's still difficult, knowing how to take care of myself... dispelling the twisted conceptions that lurk within my psyche. I struggle with pain management, not because I like being in pain (unless I'm going through a particularly dark time) but because I don't feel as if I'm ever in "enough" pain to warrant lessening it. I'm failing somehow, showing weakness and proving that I'm worthless or unworthy when I take a pain pill. There's always the thought that I could have endured more, for longer, and that I should have. Funny that I should have this mindset when everyone around me is prodding me to just take the damn painkiller already! I think I know where the seeds of this thought process come from, at least in part, but that doesn't make it any less potent or damaging. It's an evil little lie, one that I fight with on a daily basis. Multiple times. All the time.

I'm really grateful for the anti-depressant that my doctor put me on. It has helped to even out the ruts and valleys that I used to fall into so often. Just look at my blog entries! There are times when I'm down, to be sure, because of the pain or because I'm grieving or what have you, but the senseless spirals into darkness? Gone. I had already gone a long way toward alleviating them with the work I did with my last counselor, but this was the last puzzle piece, I think.

I have a friend, D, who is struggling with her past and the trauma it has inflicted on her. I hear myself when she writes to me... at least, where I used to be. It shows me how far I've truly come. I mean, I'm with myself every day, so it's more difficult to see a change, but man... it's gratifying to know that all that shit I had to wade through... there has been gain. I'm in a better place now, I really am. (And part of me is terrified to write that, because just when you think you're safe, BAM! Something happens to prove you wrong. I'm afraid that I'm going to get hit with a terrible wave of depression or that something awful is going to happen to someone I love.)

I can see that I still have work to do. But that's okay. Healing is a journey, and I know I'm not at the end of the road yet. That's why I keep going to group, keep reading books. I sure wish I could get back in with a counselor, though. That'd be nice... especially with all the crap I have to deal with with these damn illnesses. They've taught me a lot, though... and I guess I'm (grudgingly) grateful. Heh.

Laid a little low with the fibro flu today. Low fever, enough nausea to be annoying and make me feel generally gross, and a lovely little headache flitting about my cranium... plus the usual back spasms, chest pain, and gut twisting. I'm glad I don't have to go anywhere today!

 I saw a great idea on fb via Chronically Creative (I think. Can't remember. Blame it on the fog.), and that was to create a pretty "slide" listing my accomplishments for the week. It's so easy to look back at my day, or my week, and think to myself, "What did I accomplish? Did I do anything? No. I didn't. What a waste." And that, of course, is negative self-talk, which exacerbates any depression that may be lurking over my shoulder. (Depression is like a Gremlin, you know... except you shouldn't feed it ever. And don't get it wet. Though I'm not sure how that would even apply in a metaphorical sense.)

So I'm setting a goal for myself, to help keep myself accountable in speaking love and affirmation to myself, rather than criticism. I've let that slide a lot lately... it just takes so much energy to be kind to yourself when it's not familiar, and the negative, snarky, demeaning things seem so much more true when you're compromised in the way that my illnesses have compromised me.

My goal is this: every day, I will enter my accomplishments into the slide format, and when a week has been completed, I will share that picture on this blog. No matter how big or little the accomplishments, I will show myself with undeniable proof that I am not worthless, useless, or a vegetable. I am a fighter, dammit, and I fight every day. I win victories every day. It's time I started to recognize that!

The world shall tremble before the might and tenacity of the Fibro Princess Warrior, the Chick with a Stick! (Well, my internal world, that is. ^_^)

Today was kind of a tough day there for a while. My counselor has me being very aware of my self-talk, and keeping an eye on my cycle of depression, so I'll be using this here little place to keep track of that, if I can think of it.

Anyway, I had fully intended to use today to whip out my homework and to get that website done, and I wanted to get it done right off the bat, right?

Well, ended up staying up late with my darling last night, which was nice and all, but... eight hours of sleep later, I woke up later than I had wanted. Okay, no big deal. I headed over and took care of the dogs, then came back home to achieve my goals for the day. (After all, I had done my housework yesterday, so there should be nothing stopping me, right?)

Except roomie S and his friend (my friend too, now I guess... friend-by-proxy) A were here, and A wanted me to braid her hair. After a quick lunch, I did, but it ate up a lot of time. By the time I finished with her and they left for the college, it was already mid-afternoon. At this point, I had to go back to the dogs again, but I took my homework with me. I got one subject done before the guy across the street's really annoying sub-bass booming music gave me a pounding headache (like that stuff always does), and there was no way I could concentrate on algebra. In the process of putting all the critters in their proper places so I could leave, the cat ripped a hole in my tie-dye shirt, and that seriously blackened my mood. (The shirt I made during my hippie birthday. And it's right in the middle, so there's no hiding it.)

On the drive home, I was seriously in a funk. Anxious. Irritable. Stressing. Upset.

Fortunately, my Voice of Reason chose that time to begin talking quietly and compassionately to me.

What are you so upset over? Yes, yes, I understand the shirt. But you were upset before that. Do you realize that you are freaking out over self-imposed deadlines? Neither of those things are due today, you know. You had this rigid idea of what your day should look like, and then when something else showed up, you freaked out. Why so rigid? That's not healthy, dear. Go with the flow. Roll with it. It's okay. Things happen. It's life. This is going to happen again. Learn from this.

Yeah, okay. You're right, Reason. But I still feel out of sorts and stressed. What do I do?

Okay, here's what. Go home, make a cup of tea, and do that mindful breathing exercise that your counselor recommended. Then you'll be calm and collected, and you can take care of your homework from a clear mind.

Yeah... okay. Tea. Breathing. Got it.

And that breathing exercise was great. I think it will help me to not be so judgmental of myself... more mindful. More present. Calmer.

I hope.

Anyway, I'm still in a funny place, physically, because my stomach is flipping out. Per usual. But, hey, whatevs.

I feel better, emotionally.

Oh, and did I mention that my sis is going into labor?!

I'm back, baby!

I knew I'd come out of my depression funk eventually... it took a week, but I'm on the upswing.

I just need to manage myself carefully, because it's so easy to work myself into a frenzied lather of energy and motion and manic happiness after being down. It's just so delicious being happy, and caring about stuff, and having the energy to do some things! Very, very easy to go overboard.

And so, today I forewent my walk. (Forewent is the past tense of forego, yeah?) I want it, because I enjoy it, but I recognize that today was such a busy day, with so much running around and cleaning and work and stuff, that I would be overdoing it by taking the walk... no matter how enjoyable walking is for me.

I see this as maintaining those physical boundaries. "Today, I will go this far, and no further." (Did I mention that I'm proud of myself? Go me!) Life is busy right now, and I need to be wise. I somehow passed that big test with flying colors, despite freaking out about not grasping the material, and being too apathetic and unfocused to study really well. (I got over 100%. Really? Really?!) I've still got a lot of school work to do (we're learning slope and average rates of change and stuff in algebra now), on top of the HJ, but those are constants. Fluctuating constants, true... I've got a couple of odd jobs this week and the next, and I'm still trying to nail down wedding stuff. Then there's this holiday stuff, like the zombie haunted house. A group of us are going to see S's big play this weekend, and I'm celebrating my Anniversary of Life this weekend with BJ and F.

Oh, yeah-- Happy Anniversary!!

That was an Astrovan at one point in time.

I'm so happy to be alive. And to have my vision back. And that everyone else survived, too, despite the odds! Six years... I can hardly believe it.

Here's to Life.

More importantly, here's to a Balanced Life.

Cheers.